Strength for the Climb

My blog is a personal journey of the blessings I have been entrusted with and the strength I have been given to make the climb. I invite you to follow along as I write about faith, family, and Down syndrome.

So I am kind of exhausted. I had to go back to work these last two weeks of school because of insurance, but thankfully it's part time. I know that we are blessed with a good sleeper and 9 weeks is longer than some Moms have had, but I am still tired.

We had Jack's 2 month appointment last Wednesday. Here are Jack's stats:

*Weighed in at 9lb 8oz, 50% on Down syndrome chart

*Height is 23 1/4 inches, 80% on Down syndrome chart

There are a few concerns that I brought up which made the appointment a longer one...but no immediate trip down to Children's so that is a positive! :)

Jack has always been a noisy eater, gulping and gasping. He gives my heart a huge jump whenever he coughs while eating as it brings me back to his brief stay in the NICU. Well my friend mentioned to me that he sounded like he had a condition that two of her children had. Laryngomalacia. When she mentioned it to me I wondered if she was speaking English. Laryngo...what? So I had her write it down and also watched a youtube of a child displaying it, and yes...Jack has it. So we are off to the ENT to see the severity of it. Most children grow out of it and I am hopeful that Jack will too. At the ENT they will also look into his snoring sleeps possibly needing a sleep study.

Okay, so this is where I reveal again that I am kind of 'over the top' when it comes to planning/controlling or what I would define as 'setting us up for success'. Ha...:) I asked Jack's doctor that since reading Babies with Down syndrome and talking with other Moms of kids with Down syndrome, I became aware that they are prone to having numerous ear infections which sometimes leads to hearing loss and speech delay. So with this knowledge I proceed to say, "Do you think after the first ear infection Jack gets, can we just go ahead with the tubes? It was a long winter with Luke and we waited until the protocol of 3 in 3 months...so to avoid that, knowing it's very common...can we just get the tubes right away?" He laughed at me. I actually think that he thought I was joking. As I drove out of the parking lot, I kind of realized what I was asking. It was like I was asking him for a prescription for eye glasses when he has not shown any signs of needing them but because I read a book or seen other children with Down syndrome with them...Jack must need them too.

I know I need to relax. I know I need to understand that just because Jack has an extra chromosome, it's a syndrome and not everything that is common in a few children means that he will have it. I know I need to trust and stop thinking that I am going to miss something that will be extremely detrimental to his development. I still carry this weight of stress that if I don't read this book, or do this exercise, or look into this or that, he will be deprived of something. I often have an attitude of: effort = outcome. I know this is true in some things, but Jack has Down syndrome and I can't change who God created him to be and a lot of things I will have to rely on God for many uncertainties. Oh how He is pruning me for totally reliance on Him.

Be still and know that I am God.

This Tuesday, June 4th, we go for a follow up on his stomach and see the GI doctor at Children's hospital. They will look at his abdominal area again. We then go onto the swallow test to see if he is aspirating while eating. If he is, then we will have to thicken my milk and make an extra step to the feedings. I am thankful to get some answers but know that things can change very quickly. I was reminded of this when reading 47 strings author 's blog that her daughter with Ds was recently told that she has Myelodysplastic Syndrome. She more than likely will need a bone marrow transplant.

These appointments are exhausting but something that is more exhausting is calling insurance when we get bills in the mail. With a lack of sleep, I start out a conversation with the rep very calmly, but when things don't get anywhere and after 20+ minutes on the phone, I start to lose my patience. Mostly all of the outcomes have been about a referral being needed and a lack of communication between provider and benefits...but honestly, I have gone postal on a few people. I am tired, I am exhausted, and I am trying to find the joy in these things.

On Mother's day there was a video shown at church and it listed all types of Moms...Moms of small children, Moms of adult children, Moms that have lost children, Moms of children with special needs. That's me. I am now a Mom of a child with special needs. I sometimes still ask myself if this is real.

Jogging for Jack: Gigi's Playhouse
My friend Katie and I haven't run a marathon since 2009 in which we did 3 in that year. We desire to do so many more yet in this season of babies we haven't raced in awhile. We just recently did a 5k as a part of a friend's 30 events for her 30th birthday. It felt great to run again together. So I mentioned to her that there was another run on June 8th that benefitted Gigi's playhouse. GiGi’s Playhouses are Down syndrome awareness and educational centers that provide resources, specialized teaching, and support to individuals with Down syndrome, their families and the community. All of the services are free and they are located all over the world. I am thankful to have one right her in the Twin Cities. Well here is the page she put together and I am so grateful for her love and support of such a great cause!

Thanks for visiting my personal fundraising page! About two months ago I was introduced to a very special boy, Jack Carroll who was born with Down syndrome. He is the second son of my good friend and sweat sister Carissa Carroll. Carissa and I have run three Marathons together, but on June 8th we will be running an even more important race! Please consider donating to my page and helping a great cause. We all really appreciate your support.

I don't know if Jack will have an interest in running...but I do know that I have an interest in him and he makes his Mama a much better runner! I love you baby Jack and I'll jog for you always!